Thursday, March 29, 2012

As expected, the CDC announced yet another major increase in the estimated prevalence of autism. As of 2008, 1 in 88 eight year old children had a form of autism. To put this increase into perspective, consider the CDC's published autism rates for 2000 to 2008.

See the pattern? Maybe this will help.

Or consider this little fact - the CDC's estimated prevalence of autism has almost doubled went up 78% in the span of eight six years. If the current pattern holds (and I hope it doesn't), children born today would have about a 1 in 50 chance of having a form of autism.

Wednesday, March 28, 2012

So, if you were a writer for Businessweek and wanted to piss off as many parts of the autism community as you could in one article, how would you do it? Apparently, one way to do it is to write an article about a new software testing company, Square One, that is creating software testing jobs for people with autism.

Yes, I know that software testing might be a good job for some people with autism and that it is good that some companies are looking to create opportunities for people with autism.

But, there is a right way to go about it and then there is the wrong way.

The right way is to present an accurate view of what autism is (and isn't) and to present the opportunity as a win-win for both the people with autism and the companies that employee them. The right way is to treat people with autism with the dignity and respect.

The wrong way, well, the article, "Outsourcing to the Autistic Rather Than to India", should be a case study in what the wrong way looks like. Even though the article is fairly short, there is something in there that is sure to piss off almost anyone in the autism community.

It start out with the autism as superpower myth -

Part of the reason autism has captivated Hollywood moviemakers more than other developmental disabilities is that, for all the difficulties it brings those who have it, it also gives some of them the ability to perform uncanny feats of brainpower: effortlessly memorizing train schedules or song lyrics, identifying the day of the week of any date in the past. Even among those who aren’t full-blown savants, many display an impressive ability, even a desire, to immerse themselves in what the rest of us would see as mind-numbingly boring, detail-oriented tasks.

I really do love the phrases "it also gives some of them the ability to perform uncanny feats of brainpower" and "even among those who aren't full-blown savants". If you thought that all talk about the "benefits" of autism was harmless, well, there is your harm.

The idea that autism grants you "the ability to perform uncanny feats of brainpower" is getting embedded in the general public's view of autism and creating an expectation that most people with autism are not going to be able to live up to.

And the implication that savants are somehow common among people with autism? Classic.

Anyway, after you establish that people as autism have super-human brains and say they like "mind-numbingly boring" things, you move right into how those brains could be exploited -

A lot of software testing is done overseas by workers in India. The case Hahn makes is that his software testers will work for $15 to $20 an hour—pay comparable to, or even lower than, that of software testers in India, but right here in the U.S. After all, he points out, people with autism don’t have a lot of alternatives—when they do find work, it’s usually bagging groceries or sweeping hospital floors at the minimum wage.

Hahn, in other words, is proposing outsourcing to the developmentally disabled rather than the developing world. Asked whether it might be exploitative to pay people with a disability less than those without one for doing the same work, he says he doesn’t see it that way. For one thing, he says, Indian software testers aren’t exactly sweatshop labor; they make about $25 an hour. And if paying less makes the company able to hire the developmentally disabled in the first place, he doesn’t see a problem with it.

Because, you know, it is OK to pay people with autism less because they "don't have a lot of alternatives".

In a way, I can understand the point - people with autism don't really have many opinions and if we can create higher paying jobs that they can do, that is a good thing. But if the person with autism is essentially doing the same job as another person, you can't really justify paying them less simply because they have autism. I believe that would be called discrimination.

The autism community certainly needs help to create a better future for our loved ones who struggle with autism, but we don't need help from anyone who wants to exploit then.

Tuesday, March 27, 2012

In light of the bit of nonsense I talked about a few days back, I thought I would point out this new study on sensory input in people with autism. This new study demonstrates yet again that people with autism can have actual physical differences in how they respond to sensory stimuli.

So far from a "they experience everything" model, this paper takes us back to accepted - and somewhat proven - idea that people with autism experience sensory stimuli differently than a "typical" person does and these differences might account for some of the disabling symptoms of autism.

The abstract is below ( I added line breaks to make it more readable) -

Autism spectrum disorders (ASD) are associated with differences in sensory sensitivity and affective response to sensory stimuli, the neural basis of which is still largely unknown. We used psychophysics and functional magnetic resonance imaging (fMRI) to investigate responses to somatosensory stimulation with three textured surfaces that spanned a range of roughness and pleasantness in a sample of adults with ASD and a control group.

While psychophysical ratings of roughness and pleasantness were largely similar across the two groups, the ASD group gave pleasant and unpleasant textures more extreme average ratings than did controls. In addition, their ratings for a neutral texture were more variable than controls, indicating they are less consistent in evaluating a stimulus that is affectively ambiguous.

Changes in brain blood oxygenation level-dependent (BOLD) signal in response to stimulation with these textures differed substantially between the groups, with the ASD group exhibiting diminished responses compared to the control group, particularly for pleasant and neutral textures. For the most unpleasant texture, the ASD group exhibited greater BOLD response than controls in affective somatosensory processing areas such as the posterior cingulate cortex and the insula. The amplitude of response in the insula in response to the unpleasant texture was positively correlated with social impairment as measured by the Autism Diagnostic Interview-Revised (ADI-R).

These results suggest that people with ASD tend to show diminished response to pleasant and neutral stimuli, and exaggerated limbic responses to unpleasant stimuli, which may contribute to diminished social reward associated with touch, perpetuating social withdrawal, and aberrant social development.

Sunday, March 25, 2012

If you have one child with autism, what is the chance that you will have a second child with autism? It turns out the answer to that question (like everything to do with autism) is it depends.

It depends on whether the children are identical or fraternal twins. It depends on how many of your older children have autism. It might depend on whether the older children with autism are boys or girls. It might depend on far apart they are in years.

Now, it might depend on whether they are full or half siblings.

According to a new paper, the risk of developing autism if you have a half sibling with autism is roughly half that of a full sibling. The paper is sparse and light on details because it is a letter to the editor instead of a full-fledged paper, but the results are still interesting nonetheless.

In this paper, researchers looked at two different groups of children - one from the Interactive Autism Network (IAN) and another from the U.S. Autism Centers of Excellence (ACE). The IAN data is based on parental reports but has been shown to be reliable and has been used in quite a few recent papers. The ACE data set is (presumably) based on children evaluated at one of the the Autism Centers from around the US and was designed to include more minorities that you would get in a typical group of children with autism (oversampled for minorities).

Both sets were filtered to include only families that had at least one child with autism and at least one additional sibling. The siblings were separated out into full, half-maternal, and half-paternal and at most one sibling of was randomly selected from each family to be included in the paper. Although it isn't clear from the paper's text whether a full sibling and half sibling could both be included or whether precedence was given to half siblings.

The breakdown of the number and type of each sibling pair types is in the table below.

As you can (hopefully) see, the risk for half siblings is less than full siblings.

But there is another interesting bit that this data shows - the risk is very different depending on whether you have a mother or father in common. Having a mother in common means that you have roughly half the risk of a typical sibling while having a father in common gives you roughly the same risk as the general population.

Now, this difference in risk might not be as large as the data suggests because there aren't that many paternal half-siblings in either the IAN or ACE data set compared to maternal half-siblings. But the maternal half-siblings in the ACE data set, which is much smaller than the IAN data and comparable to the number of paternal half-siblings in both data sets, still shows the elevated risk for the mother. If the paternal risk were equivalent to or higher than the maternal risk, one or both data sets should have shown an increased risk.

So I think it is safe to assume from this data that the half sibling risk is different depending on whether you have a mother or father in common and that the risk is less than it would be for a full sibling.

The authors of this paper are saying that the reduced but elevated maternal risk shows that autism is strongly genetic. But I see a different picture in this data. To me, this data seems to show that not only the mother and father's genetics contribute to the risk but also that there are other major risk factors that combine to create the greater risk inside of a given family.

If there were few other risk factor and it was the genetics of the parents was the major risk factor (i.e. strongly genetic) then you would expect the risk to be elevated and roughly equal for both parents. And failing that, you would expect the risk for the higher parent to be much closer to the combined risk. Yet that is not the case here as both the mother and father have a substantially reduced risk but, taking their risks together, you don't get back to the full sibling risk.

So what could explain these results? Well, I'm not really sure but I can think of three possible explanations.

First, if you look at the ages of the full and half siblings you would see that the full siblings are closer together in age and younger. A shorter interval between pregnancies has been shown to be associated with an increased risk of autism and autism is more common in younger children than older ones.

Second, the presence of half-siblings suggests a major shift in the family dynamics such as a divorce, marriage, death of spouse, or other event that leads to the parents no longer being together.

Since the original parents are no longer together, it is very likely that at least one of the parents has moved to a different geographic area. In my experience, the children are much more likely to stay with the mother and the mother is less likely to move to a new area. So perhaps staying in the same area for later children means she is exposed the same geographic risk factors that gave her an increased risk in the first place.

Other possible changes are a reduced level of parental stress (constant stress, as is seen in failing marriages, can lead to all sorts of health problems), a change in social-economic status (higher social-economic status has been linked to higher rates of autism), parental diet, or any one of a number of lifestyle changes.

Third, this difference in risk could just be an artifact of the data and might not be real at all. After all, the full sibling rate found in this paper is much less than the most recent (and best) estimate to date (10% vs 18% or higher for families with multiple children with autism). The current data also doesn't adjust for birth order, an increasing risk of autism with birth years, premature birth, parental age, or any one of the other factors that have been linked to an increased risk of autism.

Regardless, assuming the data has some validity, I think that it suggests that something other than parental genetics increases the risk of autism inside of a family.

Friday, March 23, 2012

From the I-can-see-for-miles-and-miles department comes a wonderful new study on visual processing capacity in autism. This study claims to show that people with autism don't have sensory issues, they have processing gifts. According to Science Daily -

... people with autism show an increased ability to focus attention on certain tasks. Yet clinical reports backed up by some laboratory research show that these individuals can be more sensitive to the distracting effects of irrelevant stimuli, such as flashing lights or particular sounds, which can be easily ignored by people without the disorder.

Professor Nilli Lavie, from the Institute of Cognitive Neuroscience at UCL, hypothesises that this combination of the ability to focus and a susceptibility to distraction might be caused by a higher than normal information processing capacity.

"Our work on perceptual capacity in the typical adult brain suggests a clear explanation for the unique cognitive profile that people with autism show," she says. "People who have higher perceptual capacity are able to process more information from a scene, but this may also include some irrelevant information which they may find harder to ignore. Our research suggests autism does not involve a distractibility deficit but rather an information processing advantage."

Or in short, people with autism only appear to have sensory issues but in reality their problems are caused because they are too good at processing information....

Never mind the enormous amount of existing research that shows hyper- and hypo- sensory responses across all of the senses in people with autism. Never mind first hand descriptions of sensory issues in people with autism. Never mind all the parental accounts of the sensory issues that their children have.

Never mind that sensory issues are being included as one of the features of autism in the upcoming revision to the "official" definition of autism -

Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

Never mind that the reason that a human brain can process information and reach conclusions based on that information faster than any computer out there is precisely because the brain is extremely good at filtering out the unimportant details and focusing only on what is important.

Lets throw out all of that and pretend that, based on 16 adult volunteers with autism, the whole sensory thing is a red herring and that having autism really gives you a processing advantage.

Uhm, yeah, remember when the theory was that people with autism had eagle-eyed vision and that later turned out to be completely wrong? I would be willing to bet that this is going to be exactly the same thing again.

There was one paragraph in the Science Daily that was truly hilarious and, I think, demonstrates just how far some people will go to make their theories true -

Professor Lavie believes that the finding may help explain why people with autism spectrum disorders, such as Asperger's syndrome, may excel in some careers such as IT, which can require intense concentration and the ability to process a great deal of information from a computer screen.

While I guess the ability to "process a great deal of information from a computer screen" sounds like it could be related to being good in IT, the reality is that that only helps with the version of IT portrayed in movies.

In the real world, the visual component of a typical IT person's job is rather small. There are some rather boring images and then text, lots and lots of text. The trick to being a good IT worker is to be able to understand the abstract concepts and nuances represented by the images and text and to be able to act based on the concepts. You have to be able to filter out the noise and focus only on the part you need to.

Or look at it another way, when you look at one window on a computer screen, you have to be able to ignore what is going on in the other windows and focus on the task at hand. But if this new little bit of research is correct, that is precisely what people with autism would not be be able to do. So instead of autism being an advantage in this scenario, it would actually be a hindrance.

Although, to be honest, I don't find results like this as funny as I used to. Back when I was just getting used to the world of autism, I would run across a result like this and have a little chuckle over it. But now I just know that a few months from now I am going to be running into aspies who firmly believe that they have super human processing abilities based on this research. And that is perhaps the saddest part of all of this.

People with autism are people like everybody else, and like every other person out there they are going to have their own gifts, strengths, and weaknesses. But there is a large difference between recognizing that and all of the theories that try and attribute all sorts of special abilities to people with autism. The former is acknowledging the reality that people with autism are just like everybody else while the later causes quite a bit of harm.

Monday, March 19, 2012

According to Disability Scoop, the CDC is getting ready to release a new autism prevalence estimate in the next month or so. Although there haven't been any official comments or leaks as of yet, the new estimate is widely expected to be higher than the one from only 3 years ago.

I hope no one will be shocked by yet another increase in the "official" autism rate in the US - if you are then you haven't been paying attention.

No, the only real question is how much higher the prevalence figure is going to be this time and what justifications the CDC will use to try to explain away the increase. Although, to be honest, neither of these things are really questions.

If history is any guide, I would expect the CDC's announcement to be based on data from eight year olds in 2008 and possibly 2010 as well. That would mean that we would be talking about children who were born in 2000 and 2002, respectively.

So, based on those figures and the other historical CDC data, I would guess that the CDC's new figure will be somewhere in the range of 1 in 90 (120 per 10,000) to 1 in 80 (130 per 10,000) which would translate into roughly a 30% increase.

As for the reasons the CDC gives, well, I expect those to be almost identical to the one's from three years ago. They will say something along the lines of more awareness, more people willing and able to make a diagnosis, an increase in available services, better counting, and maybe, just maybe a small real increase in the rate.

Or in short, I fully expect 2012's announcement to be almost identical to the one in 2009. The CDC will announce a major increase in the autism rate, use the same tired lines to try and explain the increase, and tell us not to worry because they know is it an "urgent" health concern.

Saturday, March 17, 2012

Self-Injurious Behaviors (SIBs) aren't a particularly pleasant topic but it is something of a reality for children with autism. If this study is correct, SIBs are far more common in children with autism than I had thought.

Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders.

While self-injurious behaviors (SIB) can cause significant morbidity for children with autism spectrum disorders (ASD), little is known about its associated risk factors. We assessed 7 factors that may influence self-injury in a large cohort of children with ASD: (a) atypical sensory processing; (b) impaired cognitive ability; (c) abnormal functional communication; (d) abnormal social functioning; (e) age; (f) the need for sameness; (g) rituals and compulsions. Half (52.3%, n = 126) of the children (n = 241, aged 2-19 years) demonstrated SIB. Abnormal sensory processing was the strongest single predictor of self-injury followed by sameness, impaired cognitive ability and social functioning. Since atypical sensory processing and sameness have a greater relative impact on SIB, treatment approaches that focus on these factors may be beneficial in reducing self-harm in children with ASD.

The list of possible factors is helpful but, like everything in autism, the devil is in the details. It is one thing to say that "atypical sensory processing" is a major contributor to SIBs but it is quite another to find the specific sensory problem and to find a way to mitigate it.

We went through a rough couple of years where one of the twins would develop SIBs every fall that lasted until spring. There are few things more disheartening that having to physically restrain your child to prevent them from hurting themselves.

Fortunately, we managed to find a way to mitigate her SIBs after only three years of trying and she seems to be better able to regulate herself as she has gotten older. But those were very long years and my heart goes out to families that have to deal with SIBs on a daily basis.

Monday, March 5, 2012

The conclusion of this study pretty much says it all. If a mother is deficient in vitamin D during certain points of the pregnancy, the child has a much greater chance (almost 2x) of having language impairments at 5 and 10 years of age.

OBJECTIVE: To determine the association between maternal serum 25(OH)-vitamin D concentrations during a critical window of fetal neurodevelopment and behavioral, emotional, and language outcomes of offspring.

RESULTS: X2 analyses revealed no significant associations between maternal 25(OH)-vitamin D serum quartiles and offspring behavioral/emotional problems at any age. In contrast, there were significant linear trends between quartiles of maternal vitamin D levels and language impairment at 5 and 10 years of age. Multivariate regression analyses, incorporating a range of confounding variables, found that the risk of women with vitamin D insufficiency (=46 nmol/L) during pregnancy having a child with clinically significant language difficulties was increased close to twofold compared with women with vitamin D levels > 70 nmol/L.